Why I walk....

A picture is worth a thousand words, so I want to show you what research is doing to save my son.  This first scan shows his brain in November 2010.  Despite 3 years of treatment including 3 surgeries, almost 2 years of chemotherapy, and radiation, the tumor had grown larger than it had ever been.  This is a side view of Matt's head - notice his nose and face on the left of the scan.  The big white blob in the middle of the black space in the center is tumor.  All of the white snakey tendrils you see through the brain is also tumor that has spread.

 This is the same side view of the tumor, taken 10 days ago when we were at St.Jude. 

 

 Here is a view looking down on his head from the top.  Again, the white blob in the center should not be there. 

 And here is the view from our last scans.

In this case, a picture is truly worth a thousand words.  :)

Research is saving my boy.  This is a phase 1 study drug (there are 4 phases before a drug can be put on the market).

Please join our CureSearch for Children's Cancer team, Cache Valley Cancer Kids.  The research really IS making a difference and is saving children like Matthew.  Before we started this study, we were being given very little hope.  The study we are on is a Children's Oncology Group study - even though it is administered through St.Jude Children's Research Hospital.  CureSearch directly funds COG.  Therefore, CureSearch is saving Matthew's life.  :)

To donate, join our team, Cache Valley Cancer Kids.  A donation of ANY amount is appreciated, and a donation of $10 gets you on our 'team'.  We will be walking in September in Salt Lake City.  As a member of the team, you can opt to walk with us, but it is not required. 

We also have a great raffle planned for this weekend at Al's Sporting goods.  Raffle tickets are $1 each and will be on sale both tonight from 4-8 at Macey's in Providence and tomorrow starting at 9 am at Al's sporting goods.  We will be raffling off a 15 foot trampoline, a gift certificate to FireHouse Pizza, and tickets to an Aggie Basketball game. 

It's a super fun way to help support children with cancer.

So show your support today and tomorrow!  Or join our team..... OR BOTH!!!

I cannot believe it's been a YEAR!!!

This time last year, Matt, Audrey and I were at St.Jude's for the first round of Matt's new chemotherapy. 

We were scared. 

We were overwhelmed.

This year has been full of craziness as we tried to balance the side effects Matt was having with the fact that the chemo seemed to be working.  He had foot pain/neuropathy, high blood pressure, strange skin rashes/bruising, diarrhea, vomiting, and a full compliment of GI issues that were very odd.

In June, someone brilliant thought to test his stool, and it came back showing elevated fecal fat - a sign that his body was not absorbing fat properly - a sign his gallbladder might be malfunctioning.  After a 2 month fight, we finally were able to get his gallbladder out.

Surprise!!!  No more GI issues.  It's a good example of what makes Matt so difficult to figure out.  He has so many issues that could have caused the symptoms he was having.  He is like a gigantic puzzle.  With 1,000 pieces.  All of sky.  :) 

Anyhow, we went to St.Jude a few weeks ago and they were absolutely astounded by how well he is doing.  His GI issues are almost completely gone.  He hasn't had the foot problems in several months.  He has grown 4 cm. (1.5 inches).  He has been attending school for full days, and feeling well when he comes home (well, except for almost all of October, but that's another story).  He just got braces.  All in all, he is doing wonderfully and we are mixing in a bit of 'normal' with all of his 'definitely not normal'. 

Dr.Wetmore is so thrilled.  She said the average time children are able to stay on a phase 1 study is just 2 months before either the side effects become too bad, or the cancer continues to grow.  Matt has made it 12 rounds and we are all so unbelievably happy that this treatment seems to be working.

We got the go-ahead to continue this chemotherapy.  The protocol allows for 12 more months, and we will continue to travel to St.Jude every 3 months to see if it's still working.  

I am thrilled at how far we have come in a year. 

Oh yeah...

We were super cute at Easter, too!!!  :)

Just sayin'!

My 5 month hiatus is over. Maybe. If I'm not too lazy...

The 4 oldest boys went to Camp Hobe again.  Unfortunately, Matt got really sick and had to come home.  :(  It turns out he had gallstones.  We are just glad it was something easy to fix!  Still complicated for Matt, as this surgery is usually an outpatient procedure and he had to spend a few days in ICU, but still, comparatively, easy. 

I had a super-fun girls weekend with these girlies.  We saw WICKED in Boise.  It was amazing!!!  So fabulous!

When we bought our boat we hear over and over the joke about the two best days of a boat owners life: the day they buy the boat and the day they sell it.....  We've now experienced both days.  :)  The boat didn't get used as much as we thought it would, so we sold it to someone who could use it more.

These boys both had birthdays.  Matt turned 13 and Will turned 10.  I LOVE this picture of the two of them collecting fast offerings in the rain.  They are such great kids!!!

And this girl turned 2.  What happened to my baby?? 

We've been pretty addicted to Zeppes Italian Ice/Gelata.  Yum!!!

We got a new niece.  Audrey has been especially enamored with 'Baby Avey' (Avery).

Drew broke his arm on the playground at school.  If you ever want to find the most popular kid in school, just look for the first grader with a new cast.  He was not terribly sad about the extra attention this little 'accident' brought him!

Of course, I was out of town for all the broken arm excitement.  I was in Provo at BYU women's conference with these wonderful ladies.  They both have children with brain tumors, as well.  At one of our classes, we learned this presenter had just lost her son... to a brain tumor.

Isn't he the cutest kid?!?  Seriously!!!

We've been to Lagoon a LOT.  The kids received season passes this year from Grandma and us.  It has been so fun to stop for just a few hours and let the kids play.  Audrey and Jake are especially excited about going.

We hiked the Limber Pine Trail with no kids in backpacks.  Warren's back is especially excited about this milestone. 

Welcome to Utah in July!!!!  :)

There's a reason we switched to St.Jude.......

So, to spare you the worry, I will tell you now that Matt is okay.  :)  He is actually feeling quite a bit more like himself and even went to a half day of school today (I think I need to modify his schedule so he only goes 1/2 days everyday, but that's another post.....)

On Thursday he went in for his MRI.  It was a bit of a fiasco.  They accessed his port and it seemed just fine.  I was waiting and waiting and waiting and was beginning to get worried about it taking so long when the tech came out to get me - without Matthew, never a good sign.

Apparently, the tech had injected the contrast through his port, all 16 cc's of it, and then gone back to complete the scan.  However, there was no contrast in his system.......  Somehow, the port had come dislodged and there was only about 1/8" of needle inside Matt.  Instead of the contrast going into the Port and through his system, it had all been injected directly into the muscle right underneath the skin.  Everyone was absolutely shocked that Matt hadn't felt pain when this had happened.  Usually if something misses the Port, it is very painful immediately.  Besides the fact that Matt is the toughest kid I know and has an insanely high pain tolerance, he was also on massive amounts of narcotics to combat the severe headache he had.  Soooooo, they had to have an oncology nurse come down to re-access his port so he could finish the MRI and also so they could flush it with Heparin (otherwise it would clot and be unusable).  Our 3:00, 1 hour long MRI didn't get finished until almost 7:00.

I left PCMC a big bundle of nerves.  I was terrified about what we would hear.  I waited anxiously on Friday.  In fact, I waited and waited and waited - all day long.  My mind was going a million miles per minute.  It was probably good news, so that's why they weren't calling.  It just wasn't a big deal.  Or WAIT, it was probably TERRIBLE news and they were all drawing straws about who would have to tell us our child was dying, or needed a shunt, or needed another surgery, or had developed a secondary cancer, or, or, or, or.....  You get the idea.  I spoke with St.Jude 3 times on Friday.  They hadn't heard anything, either.  In fact, they had called twice and left messages, but had never received a call back.

Finally, towards the end of the day, we heard the GREAT news that Matt's scans looked great.  Our friend was able to look at the scans and read us the report.  He called the scans 'miraculous' in the change caused by the chemo, but also noted that Matt had a tremendous sinus infection.  He said he had rarely seen sinuses so terrible.

So, I got off the phone with him, called St.Jude to get the list of medications that Matt could be on for this infection, called my pediatrician and explained what we needed, and he called in a prescription for the antibiotics.  Matt has now been on the medication for 4 days and he is feeling much much better.

I've spoken with St.Jude several more times.  They are really worried about Matt.

He's been on needed treatment for 4 days.

I STILL haven't heard how Matt's MRI looked from PCMC......  And they are the ones who ordered the MRI!

Does anyone else think that is NOT OKAY???

Scary Stuff

Over the past 2 years, while Matt has been stable, I think I've sort of forgotten (blocked???) the roller coaster otherwise called 'I have a child with cancer'.  The highs are higher than you can imagine (Stable!  Shrinkage!  Miracles!!) but the lows are oh so low.  It is a weird feeling, this euphoria mixed with utter despair, and it can change in a day, an hour, an instant.

Thus, my happy go lucky post of a few days ago is now completely different.  I mentioned his feet in my last post and that was the beginning of a quick ride downhill.  He had the u/s and such to rule out clots, but then he began feeling poorly.  We can't quite put a finger on what is going on.  Every test that is run is negative, but he has been extremely lethargic, has no appetite, has a severe headache, stuffy nose, congestion, and just generally feels crummy.  When I say he has been lethargic, he's been really tired.  He slept much of the day on Saturday and over 8 hours on Monday.  :(

So, after having a crummy day Saturday and when he woke up Sunday still feeling really bad, we decided to take him into PCMC and have him seen.  In triage, he freaked everyone out.  His breathing was labored and fast, his color was bad, and just hearing Matt's history makes every doctor worth their stethoscope panic.  They ran labs (all fine) and gave him fluids.  By the time we had been there for 4ish hours, Matt was looking a bit better.  They were going to admit him to the hospital 'for observation', but I talked them out of it.  :)  I would do anything if Matt needed it, but with all the tests coming back negative, and a holiday weekend that assured me nothing would really get done before Tuesday, it seemed that Matt would sleep better in his own bed.  I promised to watch him carefully, bring him back if I was worried again, and follow up this week.

Then he slept ALL DAY on Monday. 

I hoped that he would perk up a bit once he woke up, but on Tuesday he was feeling even worse.  I quickly got ready, called both PCMC and St.Jude, dropped off my little ones with my sister-in-law and headed to PCMC.  Once there, Matt again succeeded in freaking everyone out.  I wheeled him into oncology in tears because he was in so much pain.  When the NP and nurses came in he was lying on the bed in the fetal position looking about as miserable as I've ever seen him.

Then, he started to perk up a little bit.  Of course, the doctor came in after a little while and Matt was looking much much much better.  I was actually happy the nurses and NP had seen him so miserable - otherwise I would feel like I was crazy!

Anyhow, long story short (even though this isn't short.  Ha!) they ran many many tests, gave him fluids, IV narcotics for the pain and we came home.  We go back tomorrow for an MRI to make sure this headache isn't tumor related.

And this pretty much sums up why having a kid with cancer is so difficult.  You have to learn to think backwards.  If any of my other kids are having pain in their leg, I'll help them soak it in a bath, take Tylenol, rest it, etc....  If Matt has pain in his leg, we rush into the ER for u/s and specialized tests to rule out clots or something else, then, if everything looks okay, I help him soak it in a bath and give him Tylenol.  :)
If my other kids get a virus, I'll put them to bed without a second thought.  I make sure they have a puke bucket, that their fever doesn't get too high, and that they are comfortable and feel loved.  If Matt gets a virus, we spend the next 3 days in the ER, increase some of his medications, run every test under the sun, and do an emergency MRI to rule out something in the brain causing the symptoms.

I'm trying to have faith that this is just a virus that is kicking his butt.

But I'm terrified that it's not!

So, if you are so inclined, we would very  much appreciate some prayers on his behalf.  Prayers that this is just a virus, that his scans will still look good tomorrow, and, mostly, that he can begin feeling better!

Good News

Sorry for the delay in update.  I'm just busy.... and slow. 

We returned to Memphis 2 weeks ago.  I have never ever been so anxious for appointments.  I just assumed that Matt would have his MRI's the day after we arrived.  However, they did ALL the other tests FIRST!  We arrived on Monday and didn't have MRI's until Thursday and didn't get results until FRIDAY!!!  Talk about mounting anxiety! 

I couldn't sleep.  Couldn't eat.  Couldn't think.

Thankfully, on Friday, our first appointment was with Dr.Wetmore.  She came in and the first words out of her mouth were, 'his scans look good'.  :)  She must have realized how anxious we were.  The chemo seems to be working.  All of the metastasized tumor is 'stable', which is good.  The main body of the tumor is actually a teeny bit smaller, which is a miracle!  In his previous chemo, the drop mets shrank and even eventually went away, but the main tumor has been untouchable and has only gotten smaller when it has been altered surgically.  To give you a sense of size, his tumor is roughly 5 cm. (2") by 3cm. (1 1/4").  His tumor showed shrinkage of 1/2 cm. all the way around.  1/2 cm. doesn't sound like much, but it is HUGE when you take into account the total tumor size. 

We had another blessing, too.  As one of the things they look for on this protocal, they do knee X-rays to rule out Avascular Necrosis (damage to the joint tissue).  In Matt's X-ray, there was evidence of this disease.  Ultimately, a knee or hip replacement is a small price to pay for a cancer treatment that is working, but I still felt worried about my 200 lb. 12 year old having joint problems.  Since the X-ray came back positive, we had to schedule an MRI of both knees.  In this MRI, there was NO EVIDENCE of disease.  Woo-Hoooooo!  They will continue to monitor him closely, but as of right now, Avascular Necrosis isn't a problem.

Since coming home, Matt attended school all last week.  He never made it to first period but we do our best.  :)  He is quite fatigued and nausea and vomiting have made their appearances, but he is doing pretty well.

This week he has felt fine except his feet have been really sore.  This is a mystery to everyone!  Yesterday we went in and had him checked out.  He has a petechial rash all over the top of his foot and his toes are really discolored.  They did an u/s of his entire leg to rule out clots (none, thank goodness!) and they also checked his blood flow to make sure there wasn't a circulatory issue.  That rules out the two most urgent problems that could be causing his symptoms of foot pain and discoloration.  We're still trying to get to the bottom of that.  Unfortunately, the pain has been severe enough that he has not been able to attend school since Tuesday.  :(  As long as he is taking it easy, though, he isn't in pain and otherwise feels well.

So, there you have it.  Consider yourself updated.  :)

Trip to Memphis: Take 2

Christmas did happen in the middle of Memphis trip 1 and Memphis trip 2 BUT I'm too lazy to blog about it right now.  Just know it was wonderful to be together, everyone ate too much, got spoiled with mountains of toys, games and goodies, and I was very happy to get everyone back to school.  We had one week of 'normal' routine and then Matt and I were off again.  It was barely enough time to get caught up on the laundry.  :)

Now we are back in Memphis and it has been crazy!  First, we had a bit of a fiasco with travel arrangments.  They changed the dates they needed us here and our previous arrangement fell through.  Then it changed AGAIN and turned our travel into a bit of a crisis.  Basically St. Jude's requires 14 days advance notice for travel arrangements and we didn't have that.  They had to go UPSTAIRS for special approval (insert JAWS theme music here). 

Matt and I arrived on Thursday evening, as scheduled.  He was fine on the airplane ride, chatting up the 2 ladies sitting next to him on the plane (since our reservations were made so late, I ended up sitting in front of him instead of next to him).  He seemed quite tired when we arrived and I knew he was dehydrated, so I was really encouraging fluids.  He was reluctant to drink, which often happens when he gets dehydrated and his sodium climbs higher than it should.  After we ate a quick snack, I gave him his meds, including a stress dose of his hydro cortisone since he seemed tired and overwhelmed and just a little 'off'.  After taking his meds, he promptly vomited.  It still didn't seem like he was sick, just that he was tired and I was forcing him to drink too much.  I gave him another stress dose of hydro cortisone and put him to bed. 

Friday was a big day, test-wise, and turned into a bigger day as it progressed.  We arrived early to have his first set of labs drawn.  This study is called a Pharmacokinetics Study.  It measures the amount of chemotherapy in the blood before taking the drug and then again 1 hour, 2 hours, 4 hours, and 8 hours after taking the drug.  Matt is in a phase 1 trial and phase 1 trials are all about correct dosing and what side effects occur with the drug.  After we began the test, Matt started seeming a little strange.  He was complaining of an earache and he was hungry since he had to fast for 2 hours before chemo and 1 hour after.  We finally got him a bowl of cereal after the 2nd blood draw and then went for our clinic visit.  In clinic, Matt began really, really acting poorly.  He said his ear REALLY was hurting and he began to cry - very unlike him.  The clinic doctors and nurses kicked into gear and began doing tests.  Lots and lots of tests.  While we waited for the results, they decided to start Rocephin via IV.  He laid down on the bed and as soon as they started the antibiotic, he began vomiting.  Again, he didn't seem 'sick', but something was very wrong. 

He was in adrenal crisis.

When you or I are in a stressful situation or we are ill, our body makes adrenalin.  We make a little bit every day, but in times of stress our bodies make a lot.  Matt's body doesn't make ANY and it is the most life threatening, on a day to day basis, thing we deal with.  Between the travel and subsequent dehydration and the illness, it put him over the edge.  Thankfully, we were in the hospital at the time.  They gave him an IV stress dose of cortisol and decided to admit him.  They wanted to watch him closely.  They also wanted to get the results back from all the tests.  Because of his symptoms (vomiting, diarrhea, sore throat, cough, earache) they put him in a 'strict isolation' room.  Every time anyone came into the room they had to put on a full gown, mask and gloves.  Matt was not allowed to walk around the unit, and I had to scrub my hands in a special sink right outside his room whenever I walked out. 

Hilariously, every single test came back NEGATIVE.  The only diagnoses they made was of an ear infection.  Matt is probably the first kid in the universe to be hospitalized - in an isolation room, no less - for an ear infection.  The other symptoms we saw were symptoms of either the chemotherapy or the adrenal crisis, or both.  Being the amazing bounce-backer than he is, the next morning Matt seemed great.  His labs were improving (especially his sodium because we were giving him IV fluids) and they let him out of the hospital that afternoon.

On Sunday, we were pretty tired so we took it easy.  We watched a few movies and took a nap.  We did walk over to the hospital twice to draw labs and make sure that his sodium was still coming down or stabilizing.

Monday we were supposed to go home.  We had a quick appointment for labs, and a quick visit to clinic and then our flight was scheduled to leave that evening.  When we got to clinic, Dr.Wetmore was still a little perplexed by some of Matt's labs.  His lab work, during the adrenal crisis and afterward, were 'out of range' for the study that Matt is on.  The study doctor wanted to pull him off of the study.  I do NOT want him off the study.  Of course, I don't want him to do anything unsafe, but we only have one more month until we find out if it is working!  I've been anxious to get him on a VEGF receptor for a long long time.  Dr.Wetmore (and I agree) felt like the strange labs were due to the adrenal crisis and illness.  She wanted to do a few more tests to figure out if we can get any more answers as to why his labs were 'off'.  Specifically, he had high sodium (easily explained with his DI), high Uric Acid (???They usually only see this in people with Gout???),  protein in his urine, and his liver enzymes were off.  She suspected kidney stones.  So, off we went for a kidney u/s and a 24 hour urinalysis.

Today, we got great news!  All of the labs were back to normal.  The protein in his urine is almost gone.  He does not have kidney stones.  AND Dr. Wetmore talked the study doctor into allowing Matt to continue the chemotherapy.  He had the first dose of course 2 tonight.  I am sooooo anxious for next month! 

Second great thing:  Dr.Wetmore totally went to bat for us regarding growth hormone.  I've posted enough times about our battles with doctors over this one, that you probably already know doctors won't prescribe it because Matt still has a tumor.  BUT, Matt will always have a tumor and he NEEDS growth hormone.  You and I make growth hormone and it makes us feel great.  Everything hinges on Matt receiving growth hormone.  Dr.Wetmore was shocked and dismayed that Matt is not on GH.  She wants him on GH and testosterone.  She said she couldn't find a single study that showed a correlation between GH and tumor growth.  She said, "I've spent my 20 year career in a lab trying to figure out ways to make astrocytes grow or stop growing.  Growth Hormone does NOT affect astrocyte growth)".  She is prescribing growth hormone for Matt.  We will get him a little taller and then begin testosterone.  Once testosterone is started, puberty will begin and his growth plates will begin to close.

All in all, this has been a very adventure filled trip to Memphis.  I am overwhelmingly pleased with how this trip has gone and, still, that we have chosen to have Matt treated at St. Jude Children's Research Hospital.

We will go home tomorrow - and I will start all over again on the laundry.  :)

I hope I'm not jinxing us......

I thought Audrey's cute little voice in this video was a good way to announce that they said Matt could go home for Christmas!  Yay!  Initially, they said we would need to stay a month, and I think that if we were at this point and it was January, we would be staying for that long.  But it's not, and we should be able to go home next Tuesday, and return on January 2nd and again on January 31st.  Happy Happy Day!  Matt had his first dose of this new chemotherapy today.  They will monitor him closely this week and he will have an MRI a week from today to see how this drug is affecting new blood vessel formation/blood flow in his brain and around his tumor.  Then......

We'll be home for Christmas!

St. Jude's Week 1

We've been here in Memphis for a week!  Wow!  It's been a super-busy week with tons of tests.  Here's a run down of all the tests and appointments Matt has had this week:

New Patient Assessment

Neuro-Oncology New Patient Visit

Assessment Triage/Labs/Port access

Visit to School Program

Knee X-Ray

Port X-Ray to check placement

Neuro-Oncology On Therapy Visit

MRI Brain (unsedated attempt 1)

Nutrition Consult visit/Eating safely

Echocardiagram

EKG

Visit to Family Resource Center

Social Work Consult/Visit

Child Life Visit

Patient Services Orientation

Line Nurse Visit/training

Anesthesia Consult

XR Central Line Patency check X-Ray

Line Nurse Visit

MRI of Brain (sedated this time, attempt 2)

MRI of Spine (also sedated - done along with Brain MRI)

NM (Nuclear Medicine) PET Brain Scan Injection (Sounds scarier than it is, this is just where they inject the dye through Matt's line)

CT PET Brain Scan

Visit with Chaplain

Visit with Research Nurse to sign on to minor protocals (3 of these at various times)

Pharmacy Introduction Visit

Neuro-Oncology On Therapy Visit

Sign onto PBTC20 Protocal studing the drug AZD2171 (A VEGF receptor that will hopefully stop the blood flow to the tumor).

Phew!  And THAT, my friends, is what the first week at St. Jude Children's Research Hospital looks like.  :)  Add to that several large Christmas carnivals/parties that are thrown by large corporate sponsors, and you can get a sense of how busy and tiring our week has been.  I will try to update about more specifics.  I have been journaling everything, but it just hasn't made it's way to the blog, yet. 

I will say that St. Judes is the most amazing organization I have ever had the privilege of being a part of.  They take ideal pediatric cancer care and wrap it up in an extremely kid friendly, comforting package.  One mom I was talking to was there for her son's yearly check up.  He had Retinoblastoma and is doing quite well now.  Anyhow, as she was checking him out of school the secretary said, "good luck on your visit to the hospital."  The boy looked curiously at her and said, "I'm not going to the hospital, I'm going to St. Jude's!"  They take a very difficult situation and make it as organized and compassionate as possible.  They take care of all incidentals, so that when you are here, you truly just have to focus on your child.  They arrange all travel.  They have patient housing.  Families are welcome - even encouraged.  They pay for food.  It's the first place I've ever been where every single thing is thought through and is made as simple and convenient as possible.  It is awe inspiring!  The children here are the very sickest children there are, that much is certain.  I want to kiss all their shiny heads!  But, it's also a place of hope and of laughter.  The children are interacting with one another.  The parents are supporting and helping one another.  I've been amazed to hear other parent's stories.  Every single story is as impossible and unbelievable as my own.  Every single day, casual 'how are you' conversations turn intimate, as we share our deepest hopes, dreams, and fears with perfect strangers.  It is uplifting to be here.  I am so glad we made this decision.  I pray the treatment is effective for my Matthew!

Yay! Yay! Yay! A plan, A plan, A plan!!!!!

Sorry I have been slow to update our blog.  We have been through a whirlwind of information overload, planning, and WAITING. 

The news after Matt's spinal MRI was not good.  The tumor in the spine is back.  It is creeping in at the top of the spine and through an area of the brain called the 'Circle of Willis' - basically a huge collection of arteries and veins.  There is also tumor at the base of the spine.  These are called 'drop-mets' and are little bits of tumor that have broken off, gone through the CFS (Cerebral Spinal Fluid) and landed at the base of the spine.  None of this is good news, but I'm trying to remain positive and remind myself that we had all these things when he was initially diagnosed, as well.

Part of the wait was due to a radical shift in our 'plan'.  We decided that since Primary Children's Hospital does not have a Neuro-Oncologist, that we needed to take Matthew somewhere a little bit more specialized.  We discussed several options and ultimately felt the best about St. Jude children's research hospital.  It is consistently ranked #1 in pediatric cancer care of all types and they treat a lot of children with brain tumors.  Once we made that decision, and St. Jude agreed to take Matthew, it was like a burden lifted from me.  We all feel very very good about our decision to have him treated there.  However, we had to begin the waiting game.  First, all of his records had to be sent to St. Jude.  Then, his pathology slides had to be sent to St. Jude, then we had Thanksgiving....... Aaaaaargh!  How can there be a holiday in the middle of our CRISIS?!?  LOL!  Then it was the weekend.  Then St. Jude had to send for a bit more information from pathology.  The wait has been agonizing, but today we finally got the go-ahead and the plan.  Matthew and Audrey and I leave for Memphis bright and early Monday morning.  We will be staying for a month.  (Don't talk to me about the whole Christmas thing.  I'm in denial about it.  We'll take it day by day.)  At St. Jude, the patients live 'on campus' but are not 'in-patient'.  Matt will be closely monitored, to evaluate how well he is tolerating this medication (AZD-217).  The pathologist at St. Jude agreed with the pathology of Pilomyxoid Astrocytoma and thought it had some Oligodendroglioma features.

So, today we'll get some laundry done, pack up our things, and get ready to go (oh, and go to Salt Lake to pick up Will's skis - I think Warren, Will, Nate, and Drew will keep sane by skiing.  A lot.)  Thankfully, we have a tremendously wonderful and supportive ward and neighborhood.  Everyone has offered to help, and I really do think they will do just about anything if it means helping Matt.  I'll be trying to arrange a preschool situation for Jake and then he'll probably have a play date with a buddy in the afternoons.  Carolyn and my mom will also take him some of the time.  The big boys are easy, since they are in school all day and Warren works from home.  Being able to bring Audrey is a huge relief.  I was really obsessing about what to do with her.  She is sort of a mama's girl and is only 18 months old.  When I learned that I could bring her, I felt that everything would be fine.  I am so thankful Warren works from home and that he is such a confident and competent caretaker to our children.

Matt is still doing well.  Neurologically, everyone who checks him out, is amazed.  He has very few symptoms at all from his cancer.  He had a port placed last week and that has made him a little bit sore and a little bit tired, but by the middle of this week he was wanting to go to school and was back to his normal self.  He is just upset about having to miss so much school.  :)  That's my Matt!!!  His school wanted to know what they could do for him and I thought that maybe some sort of project to benefit St. Jude hospital would be a good idea.  Then, Matt could be involved and 'give back' in some way, as well.  His teachers are wonderful and have taken the initiative to contact St. Jude and see what they need.  They have undertaken a huge project of making fleece blankets, pillowcases, and hats for the patients.  Then, Matt will be distributing them.  I think it's wonderful!

I'll try to update when we get there, and keep everyone posted about how he is doing with treatment.

Thanks for your support and love, everyone!

P.S. We had some photos taken a few weeks ago with Cecily.  She is AMAZING!  In approximately 5 minutes, in the pouring rain, she got these photos of our family.

It's a good day!

Yesterday we went to PCMC to meet with Matt's neurosurgeon.  I had spoken with their office on Monday and learned that Matt had been put on the surgery schedule and that they were beginning preliminary preparations for another craniotomy scheduled for TODAY.  We were very anxious about the surgery - not like a prompting to not do the surgery, but feeling very very nervous about it.  With brain surgery, there is so much that can go wrong.  We have met children with many different surgery side effects, everything from foot drop or facial droop, to children who have had a stroke on the table and are now paralyzed on half of their body.  Surgery can affect cognitive function and hormone function.  That brain of ours controls everything!  Matt has escaped most major side effects.  He has some cognitive/memory issues (that could be attributed to the tumor OR the surgery, who knows??) and, of course, he has no hormone function.  Overall, though, we feel like we've won the 'surgery lottery' three times, and every time we go in, the odds of winning go down.

After much discussion between doctors and ourselves, we decided to forgo surgery for a bit longer.  Matt is doing SO WELL, and we don't want to mess with that.  He has no symptoms from his tumor - no headaches, no seizures, no vision problems, no balance problems.  Dr.Walker is very leery of another surgery causing problems.  Also, the tumor is *still* in a bad place and the direction it is growing puts it in an even worse area.  Surgery would not remove the entire tumor, that much is sure.  We decided instead to opt for chemotherapy, hope that the chemotherapy shrinks the tumor, and shrinks it into an area of the brain that is more accessible to the neurosurgeon.  We will continue to evaluate Matt's situation and hopefully at some point do another surgery that removes a greater percentage of the tumor than we could get to today.

We also drove clear to Riverton so Matt could have an MRI of his spine to see if it is still clear.  I need to call and get the result of that today.  I'm nervous......  After his MRI, we went to In&Out burger.  We had never been there before - what a disappointment!  LOL!  I even looked up the 'secret menu' and we ordered off of it, but those burgers are ICK!  We'll stick with 5 Guys Burgers and Fries, thank you very much!  :)

So, now we wait until Monday when we go back into oncology to determine, precisely, what chemotherapy protocol we will do. 

Our mood today is very celebratory.  I feel very light and happy about the decision.  I guess I'm not sure the thought of chemotherapy should make anyone 'light and happy', but with the weight of surgery off of us, it feels wonderful!

A day of pondering and some clarification

After we get bad news about Matt, I always feel like I'm reeling.  It's like, all these pieces of information are floating around my brain, crashing into each other, and bombarding me with new ideas.  The first day is THE WORST and then, gradually, I start to process the information.  All the little pieces begin falling into place like a puzzle and eventually I get to 'our new normal'.  Here are some clarifications about what we are doing and what we are thinking. :)

FACT: Matt 'seems' perfectly fine.  He looks and acts healthy and feels great!

FACT: The tumor is still much smaller than it was at initial diagnoses 3 years ago.

FACT: We have a lot of treatment options (including chemotherapy and other drugs, more radiation, surgery) and combinations we haven't tried yet.  We are nowhere NEAR the point of giving up or sending him home because 'there's nothing else we can do'.

FACT: We have some amazing doctors at PCMC, and they are in contact with other amazing doctors around the country about Matt's case.  His medical situation is very complex, but we've got great people on it.  Doctors from UCSF, John's Hopkins, UCSD (Hi Bob!), and, now, Matt's oncologist is heading to MD Anderson in Texas (which, I'm trying to not be grumpy about....).  We truly have the best of the best giving advice and recommendations about treatment for our boy.  

FACT: PMA's are known to disseminate (little bits of tumor).  Matt had a lot of dissemination when he was diagnosed and it was even in his spine.  Hopefully, the chemo will be effective in getting rid of those pesky little bits of tumor.

FACT: We have an amazing Neurosurgeon who we trust almost to a fault.....

FACT: We have great doctors all the way around.

FACT: Our disappointment yesterday was not so much that the tumor was DRAMATICALLY different.  When you're looking at something about 3 cm., dramatic changes are all relative.  :)  We went into the MRI and appointment with a scale in our minds of how things could go.  On one end was the 'miracle' side where the tumor was completely gone or completely dead.  On the other end was the news that the tumor had morphed into something much more aggressive and was taking over his brain.  :)   Honestly, we knew we would be somewhere in the middle, but we hoped to be a bit further towards the positive side.  When we were, instead, a bit closer to the negative side, that was a big blow. 

FACT: Despite being disappointed that radiation didn't work, Matt is once again feeling optimistic.  He told me yesterday that he knows he's going through this trial because, "Heavenly Father knows I can handle it and I'm learning things He wants me to learn".

FACT: Life is still good.  Even when it is difficult, it is a blessing and a gift.  Our trials don't define us, unless we allow them to.  We refuse to focus so much on the difficult parts that we miss the amazing parts.  Ya gotta enjoy the roller coaster, baby!

We will try to be better about keeping everyone updated.  We are anxiously awaiting 'the plan'.  As Matt says, "we've done this before......"

I think this is exactly why they told us not to get our hopes up......

Today, Matt had his first MRI since radiation.  I went in full of hope and optimism.  Matt has seemed to be doing well.  He has been enjoying school, feeling great, and aside from a bit of tiredness (that could be attributed to me just looking for something to report), has been as good as he's been in 4 years.  In fact, he even seemed to be losing weight.  He put on a pair of pants from 2 years ago last Sunday and they fit!  After doing something so high-tech and exciting to treat his cancer, I was just sure the IMRT radiation would be a success.

Anyhow, the results of the MRI weren't just a little disappointing, they feel devastating. 

The conclusion reads:
"Growing tumor volume in the original tumor bed and extensive supra and infratentorial ventricular and subarachnoid space enhancement with ventricular and subarachnoid space tumor spread."

What this means, is that the large main tumor has grown and is filling all available space surrounding it.  It is enhancing under contrast, meaning the cells of the tumor are active and growing.  Also, and this is the really bad part, it has disseminated and spread.  Those itty bitty bits of disseminated tumor are the most difficult to treat.  It would be like trying to dig a grain of sand out of a bowl of soft frosting, without disturbing the frosting.

Matt started crying as his oncologist was explaining the results of the MRI.  That broke my  heart!  He feels so frustrated that he can feel so good and assume everything is going so well, only to find out that it is not going well at all.  We can all relate.......  It was a soggy car ride home.

So, the next step is most likely surgery.  We have an appointment with our Neurosurgeon on Tuesday.  I have a feeling that with his tumor behaving so aggressively, they will want to operate quickly.  After surgery Matt will be going on chemotherapy.  We were talking about probably metronomic (daily) Temodar along with Carboplatin and Vinblastine or Vincristine.  Matt was on Temodar before and he tolerated it very well.  I don't know if there will be different side effects with taking it daily.  He was also on Carboplatin for a short time and it made him very sick.  Vincristine is also one we're familiar with.  He was on it for 2 rounds and his sodium went so low he had to be admitted to the hospital.  I'm sure that with his Panhypopituitarism, they will be very very careful in regards to chemo.  I am also hoping that since we are more familiar with Matt's medical issues, we will be better able to manage the chemo process.  I feel like I am in a better position to advocate for him now.  I just think back to last time he was on chemo and I learned a lot (IV anti-nausea, anyone???)  I feel better prepared to evaluate his endocrine issues and would recognize low sodium before it got to the low levels he had last time.

So, there it is.  Sorry I've been so bad about blogging lately.  Life has just been going so beautifully that I think I just wanted to enjoy it.  It has been a pretty wonderful six weeks.  Normalcy..... Bliss!

Week 1 COMPLETE!

Today marked day 5 of radiation for Matthew.  His protocol calls for 30 sessions of IMRT radiation.  This works out to 6 weeks of radiation, for 5 days each week.  On Monday, my mom watched our other 5 children, and Warren and I took Matthew for round 1.  We were nervous, and a little excited (after all, radiation is meant to KILL the tumor.  We are pretty giddy and optimistic at that thought).  That first day was a challenge.  Nothing strikes in your heart the reality that 'your child has cancer' more than watching them have their radiation mask get bolted down to the table.

After the mask is fitted, a frame is placed over the mask.  This frame sets 'markers', so they can be sure the radiation is reaching it's intended target.  Each day, Matt receives 2 quick X-rays to make certain nothing has shifted.  Then, he receives his therapy.  In Matt's case, there are 7 different beams of radiation.  Each beam delivers 3 minutes of radiation.  Therefore Matt spends approximately 21 minutes each day in the radiation machine.

Since we are not allowed to be in the room or even watch the monitor while he gets his radiation, we can only guess what exactly happens.  I do know that there is a large 'arm' above him on the machine that can rotate and also the 'bed' Matt is lying on can rotate slightly in 6 different directions.  I'm sure it's not quite as intense as a simulation ride at Disney World, but that's what it reminds me of when they explain it!

Matt was thrilled with the way his mask turned out - and so were we!  It has sort of a graffiti look to it with the words  'Cancer Sucks' written across it in red.  If you know our family, you know that we don't usually speak like that, or allow our children to speak like that.  BUT, given the circumstances, it seemed appropriate! :)

On Tuesday, we had all the boys with us.  We had Will go in with us so he could see the machine and get a sense of what Matt was doing each day. 

On Wednesday, we met up with a friend that Matt met at 'Camp Hobe'.  Truly, an amazing camp!  Anyhow, Matt and this boy were in the same cabin and hit it off.  They are the same age and he also has a brain tumor, slightly different pathology, but with most of the same symptoms that Matt has.  I cannot tell you how refreshing and therapeutic it is to spend time talking with another mom who totally and completely 'gets it'.  I don't have to explain ANYTHING to her.  We have the same daily challenges, the same long-term concerns, and similar personalities when it comes to advocating for our kids.  It was great!

The logistics of radiation are proving a bit tricky, but doable.  School started this week for my older boys.  Warren has those 3 here at home.  Since they are gone from about 8:30 to 4:00, it allows Warren to get a full work day in.  Starting next Monday, I've hired a girl who just graduated from college to come every day when the boys get out of school.  She will help them get a snack, do their homework, and practice piano.  Matt and I are staying in Layton with Warren's mother.  She has been gracious enough to welcome us and is proving extremely helpful in every way!   We've scheduled radiation for 2:00 in the afternoon with the hope that we can put Jake and Audrey down for naps and they can stay with Carolyn while Matt and I run to his appointment.  It's about 2 hours door to door, so it's perfect for a nap time for my littlest ones.  This week went off without a hitch.  Matt's school has also been very accommodating.  We went in and spoke to them last week.  They have a home-bound teacher who will be collecting all of Matt's work and acting as a go-between for the school and Matt.  Since he should feel fine through radiation, he should be able to do his homework.  He's a kid who thrives on school and schoolwork, so hopefully this will just be a blip in his school career.
Thanks for thinking of us and checking in on us!  We're just plugging along at this!  It feels a little bit like eating an elephant, but we're slowly taking bites and are 1/6 of the way done! :)

I have the MOST awesome family!!!

I just LOVE these videos!  Last weekend our family had a Jones Family Reunion.  This was our impromptu entertainment.  Well...... I'm not sure impromptu is the right word, since Uncle Glen (who isn't technically my uncle - he is my grandfather's cousin - I'm not sure what that makes him to me, but we all just call him Uncle Glen) had brought along his accordion, 2 fiddles, a harmonica, a keyboard with seat, a microphone and an amplifier.  :)
This is the way I grew up.  My earliest memories are singing in front of a crowd - my mom was always telling everyone I would love to perform......  We sang everywhere.  I think it created a very jolly atmosphere at every family gathering.  Just a note explaining why I try to encourage music with my children.  Uncle Glenn here is completely self taught.  At this family reunion he started out playing the keyboard, then switched it up to the accordion, then the fiddle, then the harmonica, back to the accordion, then back to the keyboard - all without a bit of music in front of him or a single music lesson in his history.  It is AMAZING!  Just watching this 90 year old heft his accordion is a sight to behold!  LOL!  My mom is no slacker, either (oh, yeah, for those of you that don't know us very well - that's my mommy on the keyboard.)  She has a gift for music.  She can play anything using music or by ear.  I grew up thinking that every piano accompanist could change keys on my whim.  It was a shock the first time someone else was playing for me to sing and I said, "that's too high, could you lower it a little?"  They looked at me like I had 3 heads.  :)  I'm hoping that some of this talent is genetic!

I only wish I would have still been recording when my Uncle Glen had his wife come up and the two of them sang the two verses of 'Bicycle built for two'.  It was the CUTEST thing EVER!!!

Our radiation adventure begins!

Yesterday we met with our Radiation oncologist.  I was very impressed with Dr. Shrieve and felt very very good about adding him to Matt's 'team'.  Initially, I had felt like I wanted to consult with Boston, as well, because Boston is one of only a few centers in the U.S. that offers Proton Beam radiation, and specializes in pediatric Proton care.  I called them last week and sort of started the process, but was really hoping that when we met with Huntsman cancer center we would feel good about using them.  It is infinitely more convenient to stay close to home - even though I would travel to the ends of the earth if it meant giving Matt better treatment.  Dr. Shrieve actually was in Boston for a large chunk of his career and he worked closely with the radiation oncologist that now heads the pediatric radiation program at Mass. General.  He also worked with and knows very well the radiation oncologist that we were supposed to meet with last time we traveled to San Francisco when we ended up spending all of our time in ICU instead of getting the 2nd opinions we had gone to receive (I did speak with her on the phone and she recommended the same type of radiation we are going to be receiving at Huntsman). :)  I don't think it's coincidence that the doctor we are using is someone who has worked closely with the two treatment centers we have received or wanted to receive 2nd opinions from.
We spoke in depth about different radiation options and about protons specifically.  Dr. Shrieve said that in Matt's particular case, he didn't feel like protons offered enough benefit to justify the expense and inconvenience of traveling to Boston to receive therapy there.  The part of Matt's brain that will receive the most damage from radiation is his hypothalamus...... which is already completely shot.  The side effects that Dr.Shrieve would expect are the ones that we have been dealing with for 3 years - mainly complete hormone replacement therapy (panhypopituitarism) and hypothalamic obesity.  He also said that while Protons are wonderful because there is no exit dose of radiation, there is often a higher entrance dose of radiation and his opinion is that because Matt's tumor is so deep, IMRT radiation would be a better choice.  I felt a great deal of peace and comfort while talking to Dr. Shrieve about Matt's history and radiation options.  I felt like this peace was a direct answer to my prayers about feeling confident that our choice of treatment would be what is best for Matthew.
Sooooo, today we started this big adventure.  It was an extremely long day.  Warren kept the boys here, and I dropped off Audrey at Carolyn's (Warren's mother) house.  Matt and I headed to Huntsman for his 'mask fitting' and positioning CT scan.  We had about an hour and a half before his next appointment so he and I went to the zoo and walked around for awhile.  It was so fun to go with just him.  It's way faster to walk the zoo with just one older boy.  We saw practically everything in just an hour!  After the zoo we went over to Primary Children's for the longest MRI, EVER!!  They did a full MRI of his spine without contrast then a full MRI of his spine with contrast, then a special, more detailed MRI of his brain.  For every 'slice' they usually take of his brain, they took 4 'slices', so it was about 4 times more detailed than his usual brain MRI.
Here are some pictures from the mask making.  This mask will be used during radiation.  They actually fasten the mask to the table on the radiation machine making it virtually impossible to move out of position.  They really need those beams to go precisely to the tumor!

Positioning his head in the cradle

Adding the 'mesh' under his head

Using lasers and a 'sharpie' marker to make a perfectly straight line down his face.

Stretching the 'mesh' over his face.  This stuff is pretty neat.  It is a plastic sheet with holes that is heated in a hot water bath.  When is gets hot and wet it gets pliable and feels almost like clear silicone.  They can then stretch the material around the face and it conforms perfectly.  As it cools and dries, it tightens up a bit and hardens.

Waiting for the mask to dry and harden.

Another view.

Going into the positioning CT scan.

The finished product.  Sometimes they decorate the masks.  I don't know if Matt requested that his get painted.  I guess we will see next Monday when he begins therapy!

I suppose I have to update.......

I have been a slacker about updating my blog.  My friend Liz said she hoped it was because our life was humming along so swimmingly that we had nothing to update.  That actually wasn't too far from the truth!  We had an awesome 18 month run of things going well - better than we could have imagined 3 years ago.  Matt had SIX MRI's over 18 months that were stable and beautiful and perfect.

Tuesday that all changed. :(  The MRI itself was horrible.  They had a difficult time putting in the IV and had to attempt in both arms before finally getting it in.  Then Matt threw up in the MRI machine (again).  He is quite sensitive to the contrast and it tends to make him feel nauseous.  Then, the worst part of all came when we went in to see Dr.Walker and hear the results.  The tumor has grown.  A lot.  In just 3 months, one view showed the tumor had doubled in size.

Our visit to PCMC turned into a whirlwind while we were squeezed into an appointment with oncology.  One highlight of the experience was that we met the brand new Neuro-oncologist.  He recently came to PCMC from California and I liked him very much.  He was extremely thorough and had a fantastic accent (always a bonus.  LOL!)  Seriously, he made us feel very comfortable.  He was very knowledgeable and interested in Matt's case.  I am anxious to hear his recommendations about the treatment plan for Matt.  It looks like radiation is the next step, for sure, followed by chemotherapy.  We will see how intense the chemo will be.

So, right now we are busily, patiently, waiting.  We have an appointment next Wednesday with the head of the brain tumor program at Huntsman cancer institute who also chairs the department of radiation oncology.  I have also felt that I needed to get Matt's stuff sent to a pediatric brain tumor consortium hospital that does proton beam radiation.  Protons are sort of the newest thing in radiation.  I don't know if Matt will be a candidate, or even if protons are worth it if he is eligible.  But, I left a message today for the doctors in Boston.  For my own peace of mind, I need to be sure that we are doing the best thing for Matt in terms of radiation.  Your body can only tolerate so much radiation, so radiation is a one time deal.  I feel a lot of pressure to do everything JUST RIGHT.  Should we radiate the tumor bed only or add the ventricles?  Do we radiate the entire brain and spine, just to be safe?  Do we use proton beam radiation?  Is IMRT okay?  What if we just do lateral?  What are the pros and cons of each type?  Is it appropriate to do a combination of all of the above for different parts of his brain?  Sheesh.  I should've become a doctor! :)

So, unfortunately, there is the update.  It's not the update I would like to be writing.  However, I have to keep reminding myself that this is exactly what we expected the treatment plan to be when Matt was diagnosed 3 years ago (almost to the day!)  We have been able to stave off radiation and avoid radiating a 9 year old brain.  It is a blessing that his brain had 3 more years to develop.  Now we just need to continue treatment and pick up where we left off.  Am I looking forward to spending 6 weeks away from home?  No.  Am I looking forward to another year+ of chemotherapy?  No.  Am I thankful that we live in a time and a place where these options are available?  Absolutely!  Life is still good even when it's not perfect and I am so glad to have had these wonderful, treatment free childhood years for my Matt!